Invisible Illness

I have recently begun to think a lot about a term I've heard: Invisible Illness.  These are chronic illnesses (Endometriosis, Lupus, MS, many others) that are not apparent upon first glance, or upon just looking at a person.  Wikipedia has an entry for "invisible disability" which you can look at but wasn't worded well enough for my liking.  I acknowledge that there are many of these illnesses world-wide and I support people becoming more familiar with them and raising awareness about them, but this is my blog so I'm going to keep this post confined to endometriosis.

Something about this term has become so identifiable for me recently.  Maybe I just had an "a-ha!" moment where it clicked... I'm not sure.  But it just fits so well.  I think it is why people who have endometriosis, like me, can become incredibly frustrated.  I mean heck, we don't even have a good diagnostic tool.  We have to have surgery for a definitive diagnosis.  If I go to a store and stand in line and someone looks at me, I would guess they would see a pretty normal person and not think twice about it.  I look in the mirror now and I see myself "with endometriosis."  I have seen my weight fluctuate, my breast size increase to what I can only describe as "ginormous," constant bloating (which is one thing that may or may not go away from what I understand and I guess with endometriosis it's not bloating so much as swelling but I'll have to look into that more).  I see tiredness in my eyes if I'm not sleeping well, I see a hunched posture if I'm feeling pain.  I feel more myself than I did after my surgery but still, not the me that I am used to.

For me, all the invisible signs of endometriosis are incredibly real.  I feel it in so many different ways, most obviously through pain; I crave tastes I don't normally eat right after my hormone injection; I see everything through a screen of what I can do, what I may want to do, what I'm missing; I smell sweaty if I can't shower one day; I can't say that I hear much differently, but the meaning behind what people say has changed for me.  And something most people wouldn't think of but what bothers me so much: I don't wear jeans.  I can fit back in my jeans but any clothing around my lower pelvis that isn't somewhat loose just isn't comfortable.  I miss jeans.  A few years ago, if I had a choice, I would have worn jeans every single day - to work, to bars, to hang out, to have lunch, whatever.  I have not found any replacement for jeans and I'm still holding out hope that in a couple months I might not be as uncomfortable.

It is incredibly frustrating for me that people can't see what I see or feel what I feel, or, perhaps more importantly, just believe what I'm saying is true.  I have dealt with this for what feels like a very long time and yet I still get questions like "Well, can't you just go do this or go do that?"  "Why are you lying down today?"  "Why aren't you more active, it might do some good."  Hell, being more active would do a LOT of good.  I would LOVE it.  If I say I can't go to the store on a given day or I am feeling very uncomfortable sitting up one day (standing is actually better than sitting), it is because I have processed how bad I feel and how much medication I need to take and I have decided I either feel too bad to risk doing much or, more likely, I have taken an extra pain killer, in which case I do not drive because I don't feel like it's safe.  If someone asks, I can certainly explain that part, but I have been wishing for a long time that people would just give me the benefit of the doubt.  I think I deserve it.  I didn't have a perfect life before, but I would NOT choose to stay in bed all day, to have no social life, no income, or to give up on my coaching career.  Granted, looking back, there were signs of illness when I had my period or could get run down more easily than I probably should have.  I always have enjoyed being social though.  I miss my friends.  I miss meeting new people and I Definitely miss being active, working out, and playing volleyball.  None of this is a choice for me.

I have just often felt judged throughout the process of diagnosing and managing my endometriosis.  Part of it is the nature of the "invisible illness," especially in the beginning because you don't look sick.  But at the same time, I don't think I looked like a liar either.  Part of it is in perception.  I know that some people have good intentions and are not judging while others have every intention of being judgmental.  I think I am at a place where I am tired of all of it.  I have explained that I feel like crap, I think with this blog I've given more information than could possibly be expected of me, and I would like people to be supportive, or ask questions before just telling me what I could do differently or what avenues I haven't explored.  I don't mind conversation, but I get a little defensive when I know that people haven't bothered to talk with me about endometriosis OR read this blog and want to offer me treatment advice.  I have a google alert set for news on endometriosis.  I check for new articles, my doctor is very good and stays on top of current developments.  I have read about diet, homeopathy, acupuncture, other women's experiences, supplements, medications, yoga and stuff I can't remember right now.  I think I should get the benefit of the doubt, even if you can't SEE my pain or my discomfort.  

(Endometriosis isn't even listed)

I also think that Invisible Illnesses make it more difficult for others to truly empathize with what is going on.  I have had a lot of discussions about how I feel like not a lot of people have stopped to think about how this diagnosis would affect THEIR life, rather than just looking at how I'm coping with a disease that they don't really understand.  Assume you have a job or hobby you are passionate about.  Well you can no longer do that.  Assume you have an exercise routine you enjoy, that may also be social.  You can't go.  Imagine the greatest amount of pain you have ever been in and imagine that lasting for months on end with absolutely no relief, other than medications that make you drowsy or feel drugged until the pain returns.  And it doesn't matter what your pain tolerance is, it has to be the most pain you can imagine FOR YOURSELF.  No baths, no compresses, no positions, no rest, no compression, no bandage will do anything to alleviate that pain.  That was my life for the first months of my endometriosis diagnosis.  Now, after you're feeling a little better, assume that the FIRST thing you do every day is evaluate how much pain you're in so you can plan your day.  If you're a woman, imagine doing your daily activities with all the hormones you would have while pregnant.  And then refer back to my Spoon Theory article.  And that's not even with the mental and emotional fatigue and loss that goes along with it.  Now you're a little closer to understanding MY invisible illness.